The anguish of the immunocompromised

“Do I have the right to prevent others from returning to a normal life? But because of my state of health, shouldn’t society also give me a perch? asks Abdou Simon Senghor, both immunocompromised and a postdoctoral researcher at the Montreal Clinical Research Institute, where he studies the experience of patients in society.

A kidney transplant saved his life in 2010, but left him extremely susceptible to infection. This 40-year-old man lived the first two years of the pandemic holed up in his apartment, fear in his stomach. “I had phlebitis from not moving, and the lack of clean air affects me. But like many patients, I now find it difficult to rationalize the risks,” he tells me.

Approximately 3% of the population of Quebec, or 250,000 people, is immunocompromised due to a disease or a treatment that reduces resistance to infections. Faced with COVID-19, these people are significantly more likely than the general population to end up in hospital or to die, and risk being less protected by vaccines, despite an additional dose. If we add the relatives who are also often afraid of bringing the virus home, it affects a lot of people. Many, like Abdou Simon Senghor, wonder how to « learn to live with the virus ».

Recently, the researcher, who lives alone, takes a taxi twice a week to meet his colleagues and, sometimes, have dinner with them. “I know that they are careful, it reassures me. For the rest, I trust the public health authorities: when the virus does not circulate much, I do my shopping, with my mask, otherwise I order online. It ends up being expensive! I don’t see some friends anymore. And I kept the reflex to take the air only when there are few people: when someone is coming in my direction, I change the sidewalk, even if I have my mask, otherwise it is too stressful. »

Many immunosuppressed people feel more in danger than ever with the reduction of health measures, notes Geneviève Solomon, director general of the Association of immunodeficient patients of Quebec (APIQ). « For two years, public health authorities have been telling them, ‘Hide, you’ll come out when this is over.’ They are now afraid that this temporary exclusion will become permanent. »

Thanks to vaccines, the risk for many of them has been greatly reduced. Few are completely unprotected once they have received their three doses, and a fourth as a booster. But since no test offers a reliable answer as to the degree of protection, their only certainty is that they will not be sick if they do not catch the virus.

« Even some people who don’t have B cells to secrete antibodies can be well protected with their T cells, » says Dr.^D Hélène Decaluwe, pediatric immunologist at CHU Sainte-Justine, who studies the effect of vaccines on immunocompromised children. In the latter, the total absence of protection against the virus is exceptional. “We are talking about children who have just been transplanted, for example. Almost all immunocompromised children who have received all their doses of vaccine can continue school normally,” insists the pediatrician.

In November, American researchers analyzed the effectiveness of two doses in a group of more than 60,000 immunocompromised patients aged 68 on average. While an equivalent group of “immunocompetent” people were 90% protected against COVID-19-related hospitalizations, efficacy in the immunocompromised ranged from 81% for those affected by a rheumatological or inflammatory problem to 59% for those who have received an organ or stem cell transplant. These calculations were not redone after the Omicron wave and the booster doses.

Monoclonal antibodies are not a panacea to limit the risk of serious illness, but science is advancing. Paxlovid is also interesting, even if many immunosuppressed people cannot take this antiviral, because it interacts with their other treatments. « But on the social side, we haven’t given enough thought to what needs to be done to allow the immunocompromised to live well with the virus », regrets Geneviève Solomon.

The first step is that they can continue to use the mask, which we know protects those who wear it, not just others. « But if I keep it on while everyone takes it off, will it be okay? » Everything will depend on the gaze of society, ”believes Abdou Simon Senghor.

Like all outward signs of fragility, the mask is a double-edged sword, which can lead to compassion as well as stigmatization, reminds its supervisor, ethics researcher Éric Racine: “We need a strong message now to make accept the fact that some still need it. But coming out of the closet as immunocompromised in today’s fed up and polarized environment isn’t always easy. To help the people concerned, the APIQ offers them in particular to wear a pin, a symbol of their situation of vulnerability, which will however have to be widely publicized to be effective.

Geneviève Solomon, of APIQ, is not keen on the idea of ​​reserved hours. “You have to be careful about what risks further isolating the immunocompromised and making them bear the burden of their medical problem. »

For the ethicist Éric Racine, faced with this virus which spreads in the air like cigarette smoke, “we would rather bet on collective measures, which will protect both the immunocompromised and other people. It’s like when you develop a green space: everyone benefits from it, not just those who live in small dwellings”.

In other words, betting on actions that minimize the circulation of the virus would already make life much safer for the immunocompromised. “The priority of priorities is ventilation,” says pediatric immunologist Hélène Decaluwe.

A more generous management of work absences would undoubtedly help a lot, adds Éric Racine. Direct financial support, in parallel, would allow the immunocompromised to absorb certain expenses such as the purchase of masks. « You have to be creative, try solutions and see what works », pleads the researcher.

We must also educate the population about the reality of these people and the trauma they have suffered, believes Geneviève Solomon. Even though the risk of serious illness has decreased, with vaccines and Omicron causing less lung damage, living in a world where an extremely contagious virus circulates is very scary. « Many are in a state of post-traumatic stress and need to relearn how to tame the risk, but they also need recognition of their new fragility and making life easier for them, » she says.

We all have to win. Better protected by a cocktail of individual and collective actions, the immunocompromised will be able to contribute more to society and be hospitalized less. They will also reduce the risk of the virus mutating, since new variants are more likely to appear when infecting a person with deficient immunity. “We have to think about it quickly,” believes Éric Racine.